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Natural History, Genetics, and Pathophysiology of Systemic Juvenile Idiopathic Arthritis, Adult-Onset Still's Disease, and Related Conditions

Investigation of the Natural History, Genetics, and Pathophysiology of Systemic Juvenile Idiopathic Arthritis, Adult-Onset Still's Disease and Related Inflammatory Conditions

Who can join

As published by the study on ClinicalTrials.gov. "Not stated" means the study hasn't said — ask the study team.

Age
1 Day to 100 Years
Sex
All sexes
Healthy volunteers
Accepted
Compensation
Not stated

Other requirements are listed under Eligibility below. Only the study team can confirm whether you can join.

What to expect

No one can promise a trial will help you personally — that is what the research is trying to find out.

What participation involves

  • Visits mentioned: 1 visit
  • Time periods mentioned: 5 days
  • Procedures mentioned: Phone or video check-ins, Physical exams, X-rays, Biopsies, Blood draws

Only what the study's summary and detailed description on ClinicalTrials.gov say. Time periods may describe the whole study or a part of it — ask the study team what applies to you.

Show the study's own words
  • "Eligibility: People with known or suspected sJIA, AOSD, or similar inflammatory condition Design: Participants will be screened with a phone call."
  • "Participants will have 1 visit."
  • "The visit may last up to 5 days."
  • "Participants will have: * Medical history * Physical exam * Musculoskeletal exam * Questions about overall health and quality of life, disease activity, functional status, and cognitive ability."
  • "Participants may also have: * Pictures taken of their skin, joints, or spine * Blood, urine, and stool tests * Scans or X-rays of joints with arthritis * Chest X-ray * Heart tests * Skin biopsy."
  • "Participants who have a bone marrow biopsy may provide sample cells."
Compensation
Not stated
  • Study-related exams and procedures are typically provided at no cost. This is how many trials work in general — confirm the details for this study with the study team.
  • Participants are monitored closely by the research team throughout the study.
  • Some participants may receive access to an investigational treatment, which is still being studied.
  • Your participation helps researchers learn whether this approach could help future patients.

About this study

In plain language

This study follows children and adults with known or suspected systemic juvenile idiopathic arthritis, adult-onset Still’s disease, or similar conditions. These illnesses can cause fever, joint swelling, and rash. Researchers want to learn how these illnesses change over time and how genes and the environment may play a role.

Background: Inflammatory conditions can cause symptoms like fevers, arthritis, and rash. Systemic juvenile idiopathic arthritis (sJIA) is one of these conditions. So is adult-onset Still s disease (AOSD). Their causes are unknown. Researchers want to learn more about these conditions. This includes genetic changes and environmental factors. Objective: To study sJIA and AOSD in children and adults over time. Eligibility: People with known or suspected sJIA, AOSD, or similar inflammatory condition Design: Participants will be screened with a phone call. Participants will have 1 visit. It may be outpatient or they may be admitted to the clinic. The visit may last up to 5 days. Participants will have: * Medical history * Physical exam * Musculoskeletal exam * Questions about overall health and quality of life, disease activity, functional status, and cognitive ability. Participants may also have: * Pictures taken of their skin, joints, or spine * Blood, urine, and stool tests * Scans or X-rays of joints with arthritis * Chest X-ray * Heart tests * Skin biopsy. The skin will be numbed. The top layers of a small area will be scraped off. Participants who have a joint aspiration may provide a fluid sample. The joint will be prepared, then fluid is removed by needle. A corticosteroid may be injected. Participants who have a bone marrow biopsy may provide sample cells. Participants may be seen by NIH specialists. Members of the participant s family and healthy volunteers may give blood or saliva samples for genetic testing. Participants may repeat some study tests every 6 months.

Compensation is read from the study's own description and may be missing — always confirm with the study team.

Eligibility

Who can join

  • People with these illnesses may join at any age.
  • Children under 16 with systemic juvenile idiopathic arthritis must meet the study’s diagnosis rules. People 16 or older must have met those rules in the past.
  • People with adult-onset Still’s disease must be 16 or older and meet the study’s diagnosis rules now or have met them in the past.
  • Pregnant people with Still’s disease may join. They will not be asked to give skin or bone marrow samples.
  • Healthy family members and healthy people who are not related to participants may also join. Healthy volunteers must be at least 2 years old.
  • Unrelated healthy volunteers must have no history of immune system diseases, diseases affecting joints or related tissues, cancer, or abnormal cell growth. They must have no unexplained signs of inflammation, such as swelling.
  • Healthy volunteers giving blood as a comparison sample must not be pregnant.

Who can't join

  • Adults who cannot understand and give consent to join cannot take part. Children must have a parent or guardian available.
  • People cannot join if researchers think another medical condition would make the study results hard to understand.
  • People who cannot follow the schedule for follow-up visits cannot join.

Simplified for readability. The official criteria below are what the study team uses.

Official eligibility criteria

* INCLUSION CRITERIA: Affected subject: * Patients with signs and symptoms of sJIA will be classified as outlined in Diagnosis/Classification Criteria. 1. Patients less than 16 years of age will be considered to have sJIA if they meet the ILAR criteria for sJIA. 2. Patients 16 years of age and older will be considered to have sJIA if they have previously met ILAR criteria for sJIA. * Patients with signs and symptoms of AOSD will be classified as outlined in Yamaguchi Criteria for diagnosing Adult-Onset Still's Disease. 1. Patients 16 years of age and older will be considered to have AOSD if they meet the Yamaguchi criteria for AOSD (including a negative ANA and RF). 2. Patients may be considered to have a diagnosis of AOSD if they met criteria for diagnosis in the past but do not still have present evidence of disease. 3. Pregnant people with still's disease are allowed to enroll. Pregnant people will not be asked to submit to a skin biopsy or bone marrow aspiration. * The minimum age for participation in this study is between 0 and older. Healthy Subjects: 1. Healthy Volunteers related to individuals included under items 1 and 2 above will be enrolled. 2. Unrelated healthy volunteers will be enrolled for clinical, cellular, molecular, and biochemical assays, and genetic evaluation. Individuals who undergo phlebotomy specifically to provide a control specimen will include both pediatric and adult patients and will not be pregnant. 3. Healthy Volunteer should not have any history of autoimmune, autoinflammatory, rheumatic or proliferative/malignant disease or any unexplained inflammatory signs/symptoms or conditions (applies to unrelated). * The minimum age for participation in this study under this cohort is 2 years. EXCLUSION CRITERIA: Affected and Healthy subjects: 1. In adults, inability, or the lack of capacity to provide informed consent. In the case of minors, unavailability of a parent or guardian. 2. Presence of any medical condition that would, in the opinion of the investigators, confuse the interpretation of the study. 3. Unavailability, or inability to adhere with the schedule for follow-up visits

Study sites (1)

MD